The opening of the documentary Fixed: The Science/Fiction of Human Enhancement
is meant to startle. A young woman (disabled performance artist Sue Austin) in
a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater
around seascapes of coral and populations of tropical fish. The scene dislodges
expectations about what wheelchairs can do and where they belong. It creates
what for many are unlikely associations among disability, wonder, joy, freedom,
and beauty. Watching Austin incites questions about what this languid and
dreamy scene might have to do with human enhancement, which more predictably brings
to mind dazzling mechanical, chemical, or genetic interventions that surpass
the ordinariness of a wheelchair and extend human capacities. But this gentle scene
opens the way for the film’s conversations about the ethics and meanings of human
enhancement that emphasize perspectives by people with disabilities.

Regan Brashear’s film features interviews with
and footage of people living with disabilities as they move in varied ways through
their environments—home, workplace, airport, therapy lab, city street. Photographs,
news footage, and performances by mixed-ability dance companies complement
their stories. We also hear from a transhumanist, academicians, and activists.
Together they express a wider range of views about human enhancement than seems
possible in an hour-long film.

Often contrastive views are paired or
clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics
Group, brags that his carbon-fiber and other prosthetic legs will outperform the
biological legs of aging peers. His lab develops robotic limbs controlled by
biofeedback, and he intends to end disability through mechanical technologies. Gregor
Wolbring, a biochemist and bioethics scholar who was born without legs, regards
himself as a version of normal and rejects being fixed. “I’m happy the way I
am!” he exuberantly proclaims. Rather than strive for normalcy through restorative
technology, Wolbring urges acceptance of imperfection.

Altogether, the interviewees raise questions about
how to respond to differences among human bodies: focus on corrections toward achieving
a concept of “normal”? accept diversity? extend human potential? The interviews
call out underlying assumptions about disability that influence our answers. Do
we assume that disability is an aberration that should be erased? A condition
located in individual bodies? A condition brought about by unaccommodating
social and built environments? Or, as disabled journalist John Hockenberry
proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements
might be. Do they equalize opportunity? Do they misplace priorities by
channeling attention and resources away from basic health care and ordinary, essential
technologies, such as reliable, affordable wheelchairs? Are biological,
chemical, and mechanical enhancements indispensible opportunities to extend human
experience, as transhumanist James Hughes claims? Do we have an ethical
responsibility to enhance, whether to correct or extend? Hockenberry mentions that we already enhance.
Think of eyeglasses, telescopes, hearing aids. People with disabilities, he
points out, are typically the first adopters of technologies, such as
computer-brain interfaces, that are destined for wider use. Archival film
footage of warfare during this discussion reminds us what many of those uses
have been. Should we worry, he asks, about using people with disabilities as research
subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests
an exoskeleton that braces her body as it moves her forward: “Why not”?

Considering whether we should trust technology
to create equality or treat each other equally in the presence of our
differences, disability rights attorney Silvia Yee poses the film’s most vital question:
“Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is
suggestive. A woman in a motorized wheelchair offers a lift to someone struggling
to push a manual chair uphill. She invites him to grasp the back of hers and
they roll forward together.

In this wonderful short story, author Jeanette Brown describes a woman’s first visit to an alternative medicine healer. The woman has a persistent cough. Unhappy with the "five seconds per visit your doctor lavishes on you after your two-hour wait in his sterile lobby," she has taken her yoga instructor’s advice and made an appointment with a tall, olive-skinned man whose voice is "low and soothing" and whose manner is slow, relaxed, and personal.The woman, whom the healer diagnoses as "the roadrunner, a busy fidgety type," alternates between interest, skepticism and dismay. She cracks jokes; he doesn’t laugh. He recommends diet, exercise, no caffeine, and colon cleansing. She mentally rolls her eyes until, his hands massaging her foot, she feels her stomach lurch, a twinge in her armpit and begins to think of her body as "a human pinball machine." Whenever her self-defensive, rational, traditional beliefs almost propel her off the exam table and into her clothes, the healer "nails" her, reading her personality and her lifestyle exactly.Well into the visit, she realizes she hasn’t coughed once. Then, when she’s the most relaxed, incense wafting, his hands kneading all tensions from her back, her mind registering "this is bliss," her esophagus becomes blocked. Sitting up, she coughs, and the healer confronts her. "You have something to say," he insists, and she counters with "You expect me to believe all this mumbo-jumbo?" He tells her she swallows her feelings, and when she coughs again a "feather? A butterfly?" escapes from her mouth and disappears.When the healer pats her back and asks her to cough once more, she can’t. Taking her hands, he declares her "cured." At the story’s end, still not quite able to admit that this strange physician has helped her, yet knowing that he has, the woman struggles to count out his fifty dollar fee, finally dropping a handful of bills onto his bench, "hoping he won’t be offended by a tip."

Very
early in this memoir, Dr. Sandeep Jauhar refers to an essay Sachin Jain and
Christine Cassel published in JAMA (2010) that categorizes physicians as
knights, knaves, or pawns. His take: “Knights are motivated by virtue…Knaves
are selfish…Pawns are passive.” (p.7) Jauhar rides into medical practice as a
knight in shining armor on a white horse after years and years of training. Would
he be able to hang onto his knighthood?

The
book is divided into three parts—Ambition, Asperity, Adjustment—bookended by an
introduction and epilogue. Jauhar’s disillusionment with American health care
is his primary theme, and it connects these three parts:

As a young adult I believed that the world was
accommodating, that it would indulge my ambitions. In middle age, reality
overwhelms that faith. You see the constraints and corruption. Your desires
give way to pragmatism. The conviction that anything is possible is essentially
gone. (pp.
5-6)

Jauhar
is comprehensive and unsparing in accounting for the sources of his
disillusionment and his fall from knighthood. He was vulnerable to
disillusionment from the start having been pushed by his parents in into
medicine against his desires. His mother “wanted her children to become doctors
so people would stand when we walked into the room,” (p. 21) and his father
said that in medicine he “would have respect, wealth, and influence.” (p.133)
He put off medical school for as long as he could by first getting a PhD in
experimental physics. Finally, 19 years after first starting college he became
a practicing cardiologist, though not without almost bailing out of medical
school for a career in journalism as he writes in his first memoir, Intern (annotated
here).

Jauhar's
first position was as a hospital staff member heading up a heart failure unit.
As hospital staff he wasn’t paid as much as physicians in private practice.
This differential wasn’t a problem by itself, but because the salary was
insufficient for the lifestyle he sought and his wife—a physician also—urged
him to provide, “I want nice things for us: a home, safe cars, good schools. They
may seem trivial to you, but they are not to me.” (p. 75) This pressure was
made worse by his older brother earning twice the income while working at the
same hospital as an interventional cardiologist, and as well by all the other
physicians in private practice who lived in big houses and drove fancy cars.

The
story then veers into a period when he sheds his knighthood for knavery. Jahaur
joins a pharmaceutical company speaker bureau that supports a particular
product and quits over his concern that the product may have been more toxic
than first thought. Guided by his brother who says, “As much as we hate to
admit it, patients are a commodity,” (p. 92) He takes positions with various
private physician practices that operate more like procedure mills than health
care providers.

Jauhar does not do well as a knave, realizing
“I had made a Faustian bargain. Having my eyes opened to the reality of
contemporary medical practice had been painful. Now I had to make a choice.
Continuing on this path was leading to ruin.” (p. 257) And so he tells of his
adjustment, which for him is finding an “uneasy equilibrium” (p. 258) by
continuing to work with private practices, just not as much, and spending more time with his family. Thus, in the end, Jauhar does not a return to full
knighthood and becomes something closer to a knight with knavish tendencies or
a knave with knight-like qualities.

The subject of Psychobook is psychological tests, both classic tests and newly created ones. Oversized, with more pictures than text, it is truly an art book.

Psychobook begins with an introduction by Lionel Shriver, a journalist and novelist, which proves to be a very personal indictment of psychological testing. There follows a more even-handed historical essay by Oisin Wall, a curator at the Science Museum in London.

The bulk of Psychobook is comprised of photographs of tests and archival material related to tests. For example, along with intelligence tests designed to screen potential immigrants, we find images of new arrivals being tested at Ellis Island. Likewise, we see beautifully reproduced Rorshach inkblots along with pictures of Rorshach and older inkblots that may have inspired him. The Thematic Apperception Test (TAT) is a projective test in which subjects respond to images with their fantasies. Here we see the 1930s originals cut out of magazines alongside updated images especially commissioned for this volume. Each is provocative in its own way. As an added bonus, a series of photographs of psychotherapists in their offices from the 1930s to the present is interspersed with the content on psychological testing.

The book offers a detailed account by one of the
nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as
the recent history of surgical and radiation treatments in the “war on
cancer”—a term he resisted at first but finally embraced with full
understanding of its implications. The narrative touches on many of the writer’s
own struggles over economic, political, and moral implications of
what a NYT reviewer described as a “take-no-prisoners” approach to cure. He also includes stories about disagreements
with other researchers that give some insight into the acrimony that is part of high-stakes science. At
the NIH and later as head of the National Cancer Institute, DeVita faced many
decisions about distribution of resources, how much to put patients at risk,
and whom to include in clinical trials.
He provides his own point of view on those controversies frankly. Not much mention is made of the causes of
cancer, of nutritional or other complementary approaches, or the environmental
factors in the spread of cancer. The strong focus on the book is on the
development of chemotherapeutic treatments that have succeeded in raising
survival rates, though few current statistics are cited.

Beginning in 1992, Mark Duxbury and Dean McClellan are high-flying
salesmen for Johnson and Johnson, Ortho branch – happily promoting the drug
Procrit, (or Epogen -- erythropoietin), for anemia. The drug stimulates the
bone marrow to produce more red blood cells. Developed by fledging company
Amgen, it was licensed to Ortho for specific uses. Their careers take off, and
they earn bonuses and stature, peaking in 1993. Soon, however, Duxbury realizes
that he is being encouraged to promote the drug for off-label uses and in
higher doses that will enhance sales and profits through kickbacks. He soon realizes
that the drug is not safe when used in these situations. People are dying
because their unnaturally thickened blood results in strokes and heart attacks.

He raises objections with his employer. For voicing concerns he is ostracized
and then fired in 1998. Along with the stresses of his work, the financial
difficulties and emotional turmoil, Duxbury’s home life is in tatters; his
marriage falls apart and he worries about his daughter Sojourner (Sojie). He
develops multiple health problems, including sleep apnea and dependency on
drugs and alcohol.

Enlisting the help of the famous lawyer Jan Schlictmann (A Civil Action), whistleblower Duxbury launches a qui tam lawsuit in 2002 against his former employer. This is a
civil action under the False Claims Act, which can offer cost recovery should
the charges prove warranted. The lengthy process is still going. The last
ruling issued in August 2009 allowed the case to proceed. But Duxbury soon
after died of a heart attack in October 2009 at age 49.

This thoughtful essay from the author of The Emperor of All Maladies expounds on information, uncertainty, and imperfection in the medical setting. The author recalls witnessing a difficult operation when he was a medical student. The attending surgeon admonished the operating room team, "Medicine asks you to make perfect decisions with imperfect information" (p.5). This essay is constructed around that idea as the author shares three personal principles that have guided him throughout his medical career. Law One: A strong intuition is much more powerful than a weak test. (p. 22) Law Two: "Normals" teach us rules; "outliers" teach us laws. (p. 38) Law Three: For every perfect medical experiment, there is a perfect human bias. (p.54)

He views the medical world as a "lawless, uncertain" place and stresses that biomedicine is a "softer science" than chemistry or physics. Clinical wisdom, in his opinion, is imperfect, fluid, and abstract whereas the knowledge base of other basic sciences is concrete, fixed, and certain. He laments, "My medical education had taught me plenty of facts, but little about the spaces that live between facts" (p. 6).

His own "laws" of medicine are actually laws of imperfection. Clinical diagnosis can be thought of as a "probability game" where human bias creeps into the process. And ultimately common sense trumps pure statistical reasoning. Woven into the discussion are considerations on a variety of topics - children with autism, Heisenberg's uncertainty principle, genomics, radical masectomy, and randomized, double-blind studies. Nods to Lewis Thomas (The Lives of a Cell: Notes of a Biology Watcher), Thomas Bayes (Bayes' Theorem), and Johannes Kepler (Kepler's Laws of planetary motion) fit in nicely with the thrust of the treatise.

A “drive-by mammogram” leads the writer, Barbara, to a biopsy of a suspicious breast lump. She awakes from the fog of anesthesia to hear the surgeon’s bland remark: “Unfortunately, there is a cancer.” Welcome to Cancerland, a place where her identity is displaced by the vast implications of the diagnosis, another operation, and arduous months of chemotherapy. What works for her own peace of mind has little to do with the trappings of pink-ribbon sentimentalism in the survivors groups.

Barbara resorts to her knowledge of cell biology, asks to see her own tumor under the microscope, and contemplates the meaning of visualizing the malignant cells even if she does not believe the exercise can help her. She dissects the rank commercialism and denial in the survivor movement: let me die of “anything but the sticky sentimentalism in that Teddy Bear.” She decries the claims that cancer therapy makes better skin, better hair, and better people, with better bodies, especially when an implant on one side subtends a cosmetic procedure on the other.

Posting these thoughts on a chat line, she discovers that most women berate her attitude and suggest she needs a psychiatrist. But one dying woman agrees with her distress, and writes of having cancer, “IT IS NOT OK.” Admitting feminists can be found in the “survivor” community, Barbara faults its underlying tone for being coercively optimistic, infantilizing, and insulting to the dying and the dead. She is angry. Very angry, and her “purifying rage” spares no one: doctors, support groups, feminists, drug companies, and the Cancer Society. Nevertheless--and in keeping with her earlier work--she credits the women’s movement with helping to rid the world of three medical evils: the radical Halsted mastectomy, the practice of proceeding to mastectomy from biopsy without waking up the patient, and high dose chemotherapy.

Two disturbing ironies bring the essay to a close. The first, is the possibility that mammograms may not be saving or even prolonging lives, even as they detect cancers; they make women dwell in Cancerland for longer and cause too many “unnecessary” biopsies. The mammogram is a ritual, she says. The second irony lies in the role of the pharmaceutical industry which fosters the pink power movement –the ribbons, the teddy bears, the marathons-- while manufacturing the expensive poisons that seem to have anticancer side effects. These same companies, she argues, have also manufactured carcinogenic pesticides that pollute the environment. Having profitably poisoned women into having breast cancers, they continue to profit from poisons of chemotherapy. She faults both the “cult” of the survivors movement and the American Cancer Society for their “unquestioning faith” in these imperfect instruments of action.

Matthew McCarthy begins his memoir of medicine internship
year at Columbia University with a glimpse into his first rotation, surgery, as
a Harvard medical student. He had exhibited a talent for surgery and liked it
– an affinity compatible with his dexterity as a minor league baseball player
and sense of team spirit. The reader meets some of McCarthy’s memorable
mentors, and, although he opts to not pursue surgery as a career, McCarthy’s
eye for seeking productive apprenticeships with talented housestaff and faculty
allow him to guide the reader through a year of drinking from the firehose,
also known as internship. Medical training is full of liminal experiences, and
internship is one the most powerful and transformative.

McCarthy’s eagerness to do well, both by his patients and by
his medical colleagues and team, and his candor with revealing his mental and
bodily responses to the stress and strain of the responsibilities of
internship, make him an adept guide. For example, he has gulped an iced coffee
and is churning at the bit to take care of a new admission on his first day of
call in the cardiac care unit (CCU). His resident, called Baio in the book,
tries to tell McCarthy to take it easy. But McCarthy notes, “Our orientation
leaders, a peppy group of second- and third year residents, had instructed us
to exude a demented degree of enthusiasm at all times, which wasn’t difficult
now that my blood was more caffeine than hemoglobin.” (p 15) The previous
chapter had ended with a cliffhanger – a patient life would be placed in danger
because neophyte McCarthy misses the importance of a key clinical finding –
what and how that plays out will wait until McCarthy guides us through the
terror and exhilaration he feels as he begins his CCU rotation.
McCarthy has a good sense of the ironic: the huge banner
advertising the hospital reads “Amazing Things are Happening Here!” Indeed, not
only for patients and families, but also for the many trainees and workers. We
watch McCarthy successfully perform his first needle decompression of a
pneumothorax; he is allowed to attempt it as he notes that he watched the video
of the procedure. But unlike the video, he needs to readjust the needle several
times and add on some additional tubing and water trap, which makes the
scenario more true-to-life than a fictionalized ‘save.’ The author ends the
chapter with congratulations from resident Baio: “Well done… Amazing things are
indeed happening here.” (p 244) As McCarthy’s year continues, many things do
happen, including an infected needle stick, telling bad news to a new widow,
and developing a friendship with a longterm hospital patient waiting for a
heart transplant.

In this young adult novel, Kristin Lattimer is a high school
senior who seems to have everything – good looks, two best friends Vee and
Faith, excellent athleticism especially in hurdles, a scholarship to State
University, and a hunk of a boyfriend. She and her boyfriend are even voted
Prom Queen and King. Kristin’s dad is a single parent, as her mother died of cervical
cancer when Kristin was in 6th grade. Hence Kristin’s primary
sources of knowledge of adolescent changes are her Aunt Carla and her peers,
and she is able, at age 18 to chalk up her lack, not only of menstruation, but
also of menarche to her running practice. But when she experiences painful and
incomplete intercourse, she seeks the advice of a friend’s gynecologist.

Dr. Johnson quickly diagnoses “androgen insensitivity syndrome”
and explains that AIS is “a unique genetic syndrome that causes an intersex
state – where a person looks outwardly like a female, but has some of the
internal characteristics of a male.” (p. 37) The gynecologist then stumbles
through further explanations and concludes, “Miss Lattimer, I think that you
might be what some people call a hermaphrodite.” (p. 38) To the now stunned
teen, the physician further explains karyotypes, hormone levels and the “better
term” intersex. Since Kristin has undescended testes, the discussion includes
possible cancer risk, and Kristin’s dad is called into the doctor’s office as
well.

The reader follows Kristin’s journey of discovery – meeting
a ‘specialist,’ urologist Dr. Cheng, who provides the definitive diagnosis of
AIS and explains that “chromosomal sex, gender identity, and sexual orientation
are all separate concepts.” (p. 59) Issues of privacy, friendship, betrayal,
sexuality, community, ostracism, social media, athletic rules vis-à-vis gender,
and support groups are woven into the story and Kristin learns to cope with her
new diagnosis and self-awareness.